MLD massage: I have primary lymphoedema in my feet upto... - LSN

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MLD massage

teanchat
teanchat

I have primary lymphoedema in my feet upto my knees. I wear compression socks which keeps the swelling down. Recently I've been wondering whether MLD massage might help. Has anybody tried it and what improvements did you notice?

35 Replies
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Hi I've had mld for my primary lymphedema and it does nothing for me. Everyone is different so give it a try. It may work for you.

teanchat
teanchat
in reply to jjbinks

Thankyou for your reply. Yes, best way is to try it out.

I have MLD weekly with a qualified Lymphoedema therapist. MLD brings me tremendous relief - it’s a bit of respite from the heaviness and pain as the lymph is effectively drained out of my lymphie limbs. As lymph automatically builds up again due to our impaired lymphatic system, MLD is not a one off treatment. For best results having it regularly is beneficial. It’s not cheap as there are so few therapists with a MLD specialism but in my case it’s worth going without other monthly extras and putting my money toward MLD. I also use my PIP benefit to pay for it.

If you’re in the UK ensure you use a qualified therapist who is approved by MLDUK which is the professional body for therapists qualified to undertake MLD and work on people with Lymphoedema. General massage techniques and MLD are entirely different. You can use the postcode search feature on the link below to find therapists nearest you

mlduk.org.uk

teanchat
teanchat
in reply to CCT67

Yes, I do live in UK. Thankyou for the link. I looked it up today and I found two therapist within 3 miles. Thanks again for your help.

Yes it does - softens the tissue up which means the garment can compress with better results! Having MLD definitely doesn’t mean you should stop wearing garments. I’d also recommend farrow wraps for when sleeping.

teanchat
teanchat
in reply to On_porter

Thankyou for your information about MLD softening the tissue which then brings on better results from the compression garments. Good point to know and look out for when I try MLD.

I have primary, both legs and below knee. My understanding is that people have very mixed views and mixed results of /with MLD. Having not bothered with it in the past (apart from when I had multi layered bandaging) I am giving it a go. Early days yet but it has been softening the swelling in my feet and does seem to help. Too early to say whether it is really worth doing long term. My advice is try it and see what you think for you.

teanchat
teanchat
in reply to AnneBury

Yes, I will try it. Lets see what happens. Thankyou.

I have primary lymphoedma in both legs.

I had an initial six week course of sessions not cheap but worth every penny, my therapist taught me how to do it, and I bought a couple of books and I I do it regularly. I also placed a piece of wood under the foot of my bed to raise it while sleeping.

Grapefruit essential oil is good for the lymphatics and I regularly massage my feet and ankles with it.

It is being keep under control and even in this hot weather the swelling is not too bad. But I do drink a lot of filtered o water.

teanchat
teanchat
in reply to Suziemary

Booking a course of sessions, sounds like the way to go. Thankyou for passing on what works for you. I will try them out.

I'm interested to know what the books were that you've used, and if you found them useful. I've had a few sessions of MLD and found it helpful, but like you I want to be able to do it myself or have my partner help me - can't afford enough sessions to make it sustainable, though I will probably carry on having the occasional professional session to top up (and it is a real treat).

Also how do you use the grapefruit oil? I love the smell of this and have often used it as bath oil in the past just because I like it.

Sorry for delay not been looking at emails.

Books

Peter Mortimer and Jacqueline Todd: Lymmphoedema

Lymphatic Yoga Edely L Wallace

I moisturisemy legs daily with dream cream ( lush) it suits my skin to which I add a few drops of grapefruit oil. I also put a neat drop on the base of each heel.

I find Yoga and Tai chi both extremely use full.

Hope this helps!

That's all so useful, thanks ever so. I'm going to look out for both books, and have just bought some grapefruit oil to give it a try. And like you, I drink a LOT of water.

Thanks, I've managed to reserve a book on self-management by Peter Mortimer at our public library. Wasn't sure about the yoga books, seems to be very poor reviews online (little content, expensive for what it is). Is that fair do you think?

I do yoga any way and found the sequences she sugested useful Only bought the first book. So can’t comment.on the others. If you can find a second hand one you might find it use ful.

Good luck

Hi teanchat!

I just cant afford regular massage sessions,being only on a state pension and a very small works pension( which my rent swallows up)..and the local therapist i contacted told me that sessions with a qualified therapist only helps if you have pain???..

I am not sure if folk here wd agree with that statement.

However i do my own massage,following an online course of videos by a lymphatic specialist in the States,called John Ossipinsky.

He has studied the lymph system for twentyfive years and he explains exactly how to massage face and neck and then the body..

he explains how and why it works..

I love doing it,it both energises me and calms me, and only takes up about ten minutes to complete.

I also TRY ..with mixed results!..to keep following an alkaline diet,drink lots water,do regular 3-4 day veg and fruit detoxes,practise deep breathing,and i have just been lucky enough to be given a rebounder ( a mini trampoline) as exercising on this helps the lymphatic flow. And of course, i have the dreadful compression stockings ..In my case,from toes to top of thighs...

So far i havent seen any real improvement,but nothing has gone worse,touch wood,tho i have a horrid feeling that the lymphodaema is creeping up to my hips and waist..( has this happened to anyone else with lymph/ lipo in their legs?)

And the very hot weather is causing my legs to swell more i think...i have high hopes the rebounding will make that crucial difference..fingers crossed!

I hope yr booked sessions prove helpful and enjoyable..like Jj binks said,different things work for different people..

We all deserve to see some improvements in this nasty condition..good luck! X

teanchat
teanchat
in reply to StellaM

Hi StellaM, Sorry for my late reply - been a bit busy and I forgot to look. I was interested to read what helps you. I have recently had a short taster of what MLD is like. Didn't feel any different at the time but later when I got home I noticed it felt easier climbing up stairs. But not sure, maybe I was having a good day. The cost is too much for me too. I will try to learn to do it myself.

How has the alkaline diet helped you and the veg and fruit detox? What do you know about it? I haven't heard about it before.

Thankyou, good wishes to you.

StellaM
StellaM
in reply to teanchat

HI teanchat! I do like your name..tea and chat is so nice ....specially if a bit of cake involved! 😋😋

I'm sorry for my late reply too..i usually only visit here on Sundays.

I'm glad you got some help from yr MLD.. I do think your climbing stairs more easily might be down to that!

I' m so sorry you can't go back for more treatments..i wish it was available on NHS! i suppose we have to be grateful the dreaded stockings are free 🙁🙁🙁

Alkaline diet,am not sure its helping me yet but its early days,and I am not as strict as I could be..

the Lymph Man who advises me says that acid foods cause inflammation which leads to a myriad of health probs,and alkaline foods heal inflammation and disease.

One quick easy thing to do alkaline wise is to have alkaline water every morning..basically warm water with lemon in it,and a pinch of himalayan salt..doesnt taste great but worth the effort,just swig it down. Tho lemons are acid,they work on the body in an alkaline way ( I never knew that!)

There are lots of examples online of what to eat on an alkaline diet..

Lots of fruits,green veg,seeds,nuts,fish,coconut are alkaline...meat,poultry and refined carbs are acid. Eggs are acid but they say to eat them anyway as theyre so full of goodness.

Lymph Man suggests doing the fruit/ veg detoxes as just another way to help remove toxins from yr system..he recommends doing them regularly for several days in a row..i started with just one day,have worked up to four..but i admit i dont do it often enough as i find it quite difficult to keep up! I find it hard to stay disciplined some days,but I'm hoping that trying all these things in conjunction with the stockings and the rebounding will be a multi pronged attack which will get the lymph moving.

If it never improves, i will be happy as long as it doesnt get worse!

Good luck if you give the alki diet a go! Every little positive thing helps somewhere i think,even if not those stubborn lymphs.

Decreasing inflammation should lead to some health benefits,fingers X'd.

Take care,best wishes to you TnC and all us lymphies ..i think we have a brave bunch of them here! 👍🏻 💕💐 XXXX

teanchat
teanchat
in reply to StellaM

Hi stellaM, thankyou for your kind, detailed information. There's lots there, for me to try. Thanks for your fun comments about my name. I agree, tea 🍵 and cake 🍰 is yummy 😋 x

I massage myself using the guidance my nurse gave me along with a trial and error approach and see really good results. I have bilateral thigh and groin lymphoedema and with a combination of massage, compression and exercise I can keep the swelling to a minimum. I can feel the difference in my groin before and after massage. I also use a few deep breathing exercises that I learnt at yoga which I think helps too along with swimming and a low carb diet. I think you sometimes need to try something out for a few weeks and see if it works for you or not and if so keep doing it, if not try something new!

Good luck x

teanchat
teanchat
in reply to Angelil

Hi Angelil, it's good to hear what works for you. Why did you start eating in a low carb way and how does it work?

Angelil
Angelil
in reply to teanchat

Hi teanchat

A low carb diet is anti inflammatory so reduces swelling. One version is called the Keto diet and if you google it loads will come up but basically you eat less carbs, more fat and moderate protein. I can only speak from personal experience but I have had great results from it - the problem is it’s really hard to stick to as i’m vegetarian too! You also need to work out the carb values in everything you eat and still make sure you get enough vitamins etc. I tend to do a couple of weeks following the diet strictly then a couple of weeks not so strict and I still see results from it.

Hope this helps 😀

teanchat
teanchat
in reply to Angelil

Hi Angelil, so glad your doing so well. I'm curious to know more about keeping inflammation down. Actually I have high ESR which means I have high inflammation in my body. Recently it's been about 40 but it has been over 60 in the past. Normal is below 10. I do have Primary Lymphoedema in both legs up to my knees. Does lymphoedema cause inflammation? Sorry to bother you with yet more questions x

Angelil
Angelil
in reply to teanchat

Hello again, I think the swelling can cause inflammation as part of the bodies natural response (but i’m not a medical professional!!!!). There are plenty of articles on the internet, quite recent ones too, but the link below provides quite a good summary.

mylymph.com/2017/09/04/diet...

I can only speak from personal experience, I have a normal BMI and only my thighs increased in size when I developed lymphoedema following cancer treatment. I found that both of my thighs reduced following the diet, my right thigh was my most affected and it reduced to almost the same size as my left, however please speak to a medical professional for proper advise!!!

Hope this is helpful 😄

teanchat
teanchat
in reply to Angelil

I looked up the link and it was very interesting. Thankyou for sharing, what works for you x

StellaM
StellaM
in reply to Angelil

Hi Angelil, i lost 100 pounds in a year on a low carb diet so i am an strong advocate for it too!

I was ashamed to have so much to lose,but the weight gain was linked to being very sedentary for several years due to health probs. Slowly the health probs got better and i could tackle the weight. Low carb is great for seeing encouraging weight loss results! And for not having to go hungry!

Sadly after i lost all the weight,i was told what i had thought was my fat legs was lympho and lipo daema...that was a bit of a blow after getting slim everywhere else!

I am trying to follow an alkaline diet now,which resembles low carb in many ways.

I really admire you sticking to low carb as a vegetarian! Well done!

I have a friend who is struggling on it. She is not only veg but has a nut allergy.

Well done also on the other measures youre taking,it sounds like youre really managing well.

Thanks for sharing your tips! X

Angelil
Angelil
in reply to StellaM

Low carb as a vegetarian is difficult but no nuts would be awful! I graze on nuts and seeds all day!

I’ll take a look at the alkaline diet as an alternative, thanks for that x

StellaM
StellaM
in reply to Angelil

I know! I wd be lost without a crunchy handful of nuts n seeds to snack on! X

Hope most answers were helpful. Has there been an investigation why you have swelling to ankles..? Most chalcium channel blockers ( blood pressure medication) cause ankle swelling or any medication ending with PINE.. please read side effects of any medication you might be taking. Yes MLD is helpful but you can also teach yourself self massage. Which is available on you tube various videos. As Simple Lymphatic Drainage also wearing some anklets Activa does some on prescription as well as cheap to buy. You can to up with MLD sessions but do them as intensive therapy rather than sporadically.... Hope all covered and good luck.

Yes, very helpful. My diagnosis is Primary Lymphoedema but don't know why I have it. The swelling in my ankles started in my teens. My blood pressure is low to normal and no other medication thankfully. I will look on You Tube and get some guidance. Thankyou for all your advice.

Kent,i didnt know that about bp meds..and meds ending in PIne..

Thanks for the info!

how do the anklets help? X

They give extra compression at the ankle you can even were them on top of your compression check with your nurse if appropriate I.e Doppler Studies are satisfactory also easy to wear on an ‘off day’

Thanks Kent, i have spec nurse appt in a few weks so will ask x

Super also ask if Kinesio Taping will be suitable...

Hi there. I just wanted to put in my two cents worth about MLD. I live in Seattle, WA in the US and we have a forty person lymphedema support group here. We frequently have lymphedema specialists speak to our group and the general consensus is that MLD really does help. The goal is to keep the lymph fluid turning over on an ongoing basis in order to keep it from hardening and getting fibrotic and MLD helps with this. MLD should be done every day and it is relatively easy to learn. The trick is to not apply hard pressure like an ordinary massage, but very light gentle stretches to the skin. I put on a podcast and get into a comfortable position. It takes me about a half an hour to complete. Deep, diaphragmatic breathing is an essential part of MLD. Hope this helps.

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